Ping dances through obstacles in her life

Comment

By Carole Winters

Pontiac Daily Leader - Pontiac, IL

By Carole Winters

Posted Dec. 9, 2012 at 12:01 AM

By Carole Winters

Posted Dec. 9, 2012 at 12:01 AM

Jessica Ping, daughter of Dennis and Connie Ping, is an accomplished dancer, a straight "A" student, and is one of 60 people worldwide that has CHILD syndrome (Congenital Hemidysplasia with Icthyosiform Erythroderma and Limb Defects).

It is a condition that affects the development of several parts of the body. In Jessica's case, she has a shortened limb and is missing one leg. In addition, she has a skin condition that is characterized by patches of skin that are red and inflamed (erythroderma) and covered with flaky scales (ichthyosis).

… And she is my hero. She is an amazing young person.

The limb abnormalities occur on the same side of the body as do the skin abnormalities. According to Genetics Home Reference, "the condition occurs exclusively in females and is caused by a mutation in the NSDL gene, a gene that provides instruction for making cholesterol. It is not known why or how a disturbance in cholesterol production leads to the specific features of CHILD Syndrome."

Jessica said she does not know much about the syndrome, because not many people have the condition. She has not met another person with similar development problems but her doctor has seen others and helps her by telling what has worked for the other patients she sees. "I go to the Shriners Hospital in Chicago and a skin doctor in Chicago."

"I have a mild case of CHILD," she said.

Jessica has worn a prosthetic leg, but found it uncomfortable. "When I am 18, I can get a more permanent prosthetic leg. I will have to go and have it fitted then."

This pretty, blonde-haired, shy young lady does not have time to ponder the inconveniences of her disability, although she admits she has gone through phases of "challenges."

"When I was younger, I would ask why do I have to work so much harder than other people? When I was younger, I felt like people judged me because I was different on the outside. On the inside, I was the same as everyone else."

"In elementary school, I had a problem making friends, because I am shy. I wanted to yell, 'I am here!!" All of that went away when I got in middle school. As I got older, little by little, I accepted having CHILD syndrome. You have to decide what are you going to do — meet the challenges or not."

When asked if there was ever anything that she always wanted to do but could not due to CHILD, she said, "When I was in second grade, I wanted to play softball, but my dad talked me out of it. I focused more on dance and now I am glad. I think, at the time, I just wanted to play softball, because everyone else was playing softball."

Page 2 of 4 - At the high school, Jessica uses a motorized vehicle to get around. When that is too cumbersome, she has developed a highly balanced hop. In crowded high school halls and tricky classroom situations, nothing seems to faze this young woman (personally, I would want to tell a few people about the importance of not getting in my way), but not Jessica. She is a serious student, always with a smile on her face, dressed in the latest fashion and in the center of conversations with friends. She never appears frustrated or angry about the difficulty she has getting around.

And frankly she is just too busy doing things she wants to do, to think about things she might not be able to do. Since she has been in high school, she has been active in the PTHS Marching Band, playing mallet instruments like bass drum and bells, also playing trombone. “Usually, someone pushes me in a wheelchair, while I play during parades,” she said.

In addition, she has also been involved in Concert Choir, Concert Band, Scholastic Bowl Team, Dance Team, The Chief school newspaper, Speech Team, Student Council, CAPTAINS, a school leadership club, Tri-M, the P2D2 prescription drug program, Operation Endangered Species and Thespians.

Outside of school, she attends various church youth groups, has been active in Vermillion Players since she was 7, and had a lead role in “Lil Abner” and “Annie.”

Also, one of the things she is passionate about is dance. She has been in dance since she was 3, took a few years off, and then returned to the Dance Center in fourth or fifth grade, she said.

Presently, she has three teachers, Anita Nangel, Stacy Kolojay and Becky Nangel. She has danced under the watchful eye of all three teachers and said, “They are all wonderful.”

“I like how for once I can be like everyone else. I can express myself and have fun at the same time. Between the movements and the music I get to just breathe, it’s a great stress reliever. It’s just a great feeling when you step onto that stage to perform.

Anita Nangel, who owns and instructs at the Dance Center, said, “When Jessica is performing, she has an amazing stage presence. Her joy comes from within. She has so much talent and she loves to be on stage. She passes that joy on to others.”

“When we first started working with her in fourth or fifth grade, we were scared to death to teach her. We had not worked with a special needs person before. You can’t choreograph a dance number around her disability, but she is a joy to teach and handles everything so well. During dance competitions, new judges are amazed at her balance.”

Page 3 of 4 - Because of her disability, Jessica may have opted out of softball, but she has had some exciting opportunities because of her disability. One event dealt with her 10th birthday

“My parents drove me to Texas to see a Radio Disney’s 10th year anniversary. It starred Hannah Montana and the Jonas Brothers. Because they were not going to be in the area, my parents drove me to Texas. Back then, the arena did not have any handicap accessible seating, so we got moved to the front row. It was great.”

“We went to the JFK Memorial, too,” Jessica said.

“Another time, my dance group was at a competition that Abby Lee Miller from Dance Moms on television was at. She saw us dance and her security went to my dance instructors and said Miss Miller wanted to meet me. My mom and dad thought it was OK, so a friend and I were allowed to go to her dressing room and meet her dance group. Everyone was really friendly to me, but you could kind of feel some tension between the mothers like on the show. I wish I could have taken my whole group,” Jessica said.

“At that competition, we got high gold. Every competition is different, but this one scored you by platinum, gold, high gold, silver and high silver. We did pretty good,” she added.

A third exciting moment occurred this summer when Jessica and her friend Clair Baumann won second place at the Livingston County 4-H Fair talent show with a jazz number that Jessica helped to choreograph.

Jessica admits she has a very supportive family including her mom and dad and her grandmother, Lavonne Ping. “Everything I have done is because my parents are so supportive, allowing me to come home and rant about the day. They take me everywhere I want to go and ship me around to all my activities.”

"As Jessica's parents, we are extremely proud of her. There are so many areas that we could focus on. She has such an inner drive to achieve. Jess sets lofty goals and then attacks those goals with a vengeance. She works very hard to be as good of a person as she can be. We believe that is probably one of her greatest traits. We hope she will keep that forever," said her father Dennis Ping on behalf of himself and mother Connie Ping.

Jessica is a multi-talented individual who wants to go in several different directions after she graduates. “I would love to become a singer, but I have to be practical, that is pretty difficult to become successful. I am thinking about becoming a lawyer or maybe working in a forensics lab. I would love to go to Notre Dame or Stanford.

Page 4 of 4 - If she could tell people one thing about having an ability/disability, she said, “There are always going to be challenges in your way. You have to find a way to work through them. You have to find a way to overcome your disabilities.”